Sharing the stories of those affected by Autoimmune disease

Medical Research

As the SARS-CoV-2 virus responsible for the COVID-19 disease continues to infect people and claim lives across the globe, scientists and medical professionals are learning more about its impact on patients.

One interesting phenomenon that’s been observed is that some coronavirus patients experience relatively mild to moderate symptoms, while others experience severe, life-threatening problems that can land them in the ER. According to Sharp Health News, the virus itself may not be entirely to blame for this, but rather, an overreaction by the body’s immune system.

When a foreign agent, such as a virus, invades your body, your immune cells secrete cytokines, which are molecules that initiate an immune response. However, in some cases, immune cells continue to secrete cytokines, even after a sufficient immune response has been mounted. This is called a ‘cytokine storm’ and the overproduction of these molecules can cause a harmful inflammatory response in the body.

Certain people are more susceptible to cytokine storms than others; for example, there is evidence that those with genetic mutations in their immune cells are more vulnerable. According to creakyjoints.org, those with autoimmune conditions often have abnormally high levels of these cytokines, which is why autoimmune patients often take immune-suppressing medications. However, a cytokine storm isn’t the same as an autoimmune disease flare, though they can be related.

As detailed by creakyjoints.org, some autoimmune patients end up with cytokine storms unrelated to COVID-19. Dr. Randy Cron, a pediatric rheumatologist and author of the book Cytokine Storm Syndromecommented, “About 10% of patients with juvenile idiopathic arthritis will experience [a cytokine storm]; in some cases, multiple times.”

With regards to COVID-19, which is respiratory in nature, a cytokine storm can gravely impact a patient. Acute lung injury (ALI) is a common consequence of a cytokine storm occurring in the lungs, and if a lung infection is severe, the inflammation will spread to the rest of the body via one’s blood circulation and cause sepsis. In some cases, the immune response to an infection can even be deadly.

That’s why it’s important to ‘calm the storm’ and prevent a cytokine storm before it even happens. One type of treatment being explored for COVID-19 is hydroxychloroquine, which is an antiviral and immunosuppressant drug used to treat malaria and autoimmune diseases like lupus, rheumatoid arthritis (RA) and Sjogren’s. Although the medication is still undergoing clinical trials, many are hopeful that this drug will serve as a treatment to halt the progression of COVID-19.

Besides pharmaceutical therapies, Sharp Health News cites curcumin, a compound found in turmeric, as beneficial for its anti-inflammatory properties. A 2015 study states that in lab experiments, researchers found that curcumin blocked the release of the cytokines that are responsible for inflammation.

All in all, it’s important for autoimmune patients to guard against the coronavirus by adhering to strict hygiene guidelines, such as hand washing thoroughly with soap and water, avoiding close contact with others, and disinfecting surfaces routinely. Remember, prevention is the best form of treatment, and can help those with autoimmune disease to avoid a damaging cytokine storm.

A health care professional holds up Plaquenil, which is being explored as an experimental treatment for COVID-19 (Photo credit: The New York Post).

Last week, I stopped by the pharmacy to pick up my prescriptions – a normal occurrence for any autoimmune disease patient. As I waited in line, a heard a young woman ask for Plaquenil, an anti-malaria drug commonly used to treat autoimmune conditions such as lupus, rheumatoid arthritis (RA), and Sjogren’s Syndrome.

Unfortunately, the pharmacist responded that they were completely out of Plaquenil, and they weren’t sure when they were going to have the medication in stock again. The patient, looking upset, left the pharmacy empty-handed.

It’s no surprise that Plaquenil, and its generic counterpart, Hydroxychloroquine, is in short supply. During recent press conferences, President Trump claimed that the drug had potential to treat those suffering from COVID-19, the disease caused by the novel coronavirus. He was swiftly contradicted by his top infectious diseases adviser, Dr. Anthony Fauci, who said that the evidence that the drug was helpful for the virus was anecdotal at best.

Despite the experimental nature of the drug for treating COVID-19, this hasn’t stopped people from trying to stockpile the drug. In fact, a recent New York Times article stated that pharmacy boards have discovered that doctors are hoarding the medication by writing prescriptions for themselves and their family members. The situation is especially dire in the states of Idaho, Kentucky, Ohio, Nevada, Oklahoma, North Carolina, and Texas.

The American Medical Association’s president, Dr. Patrice Harris, denounced the practice, saying that the association “is calling for a stop to any inappropriate prescription and ordering of medications…and appealing to physicians and all health care professionals to follow the highest standards of professionalism and ethics.”

As a result, a number of pharmaceutical boards have imposed restrictions, such as barring pharmacies from dispensing both chloroquine and hydroxychloroquine unless the prescription includes a written diagnosis of a condition that the drugs have been proven to treat. Other rules include limiting the prescription to a 14-day supply unless a patient has previously taken the medication.

Still, not every state’s board has taken action to ensure that the drug is made readily available to autoimmune disease patients. As a result, the Lupus Foundation of America, Arthritis Foundation, and other medical associations have issued a joint statement urging the White House to ensure access to the medication during the COVID-19 crisis, citing the fact that it is the only known drug shown to increase survival in patients with lupus.

For Sue Hauk, a 48-year-old lupus patient from Conshohocken, Pennsylvania, Plaquenil has been a lifesaver. Her main lupus symptoms include: joint pain, chest pain, fatigue, and nausea, which this medication helps to keep in check. When she first heard reports of the medication being scarce, she contacted her pharmacy to request a refill of her prescription, but they couldn’t offer her more than a five day supply. She then called seven different in-state pharmacies, and then five out-of-state pharmacies – each were either out of stock, or refused to fill her prescription since she wasn’t an existing customer.

“I thought, that can’t happen to me, because I’m on this and this is my life-sustaining drug. If I can’t find more, once it’s out of my system I don’t know what will happen,” Hauk said. “I’m at a loss right now.”

Sue Hauk, a lupus patient, is concerned that she won’t have access to her life-saving medication due to the COVID-19 pandemic (Photo credit: PBS).

There are over 1.5 million Americans living with the autoimmune disease lupus, who could be adversely impacted by the unnecessary stockpiling of this medication. While it’s funny to joke about people stockpiling items like toilet paper, hoarding medication has much more serious consequences.

Samantha Wayne, another lupus patient who has been taking the drug for the last 12 years, said in her YouTube video that hydroxychloroquine ensures that her symptoms don’t flare up and cause more inflammatory damage. She says it also prevents many patients from having to utilize more intensive therapies, such as immunosuppressant organ transplant drugs or chemotherapy. She also points out that this may be the only treatment deemed safe for use for pregnant autoimmune patients. She concludes the video stating that while she’s concerned about finding a way to combat the coronavirus, “those of us with autoimmune issues, such as lupus, we matter too.”

Samantha Wayne, a lupus patient and YouTuber, is raising awareness about the consequences of autoimmune patients not having access to hydroxychloroquine (Photo credit: Live Hope Lupus).

Cindy Messerle, CEO of the Lupus Foundation of America‘s Philadelphia Chapter, echoed those sentiments, saying, “I do hope that a treatment for COVID-19 is found ASAP. If it happens to be with hydroxychloroquine, the important thing is that people who take in on a daily basis for lupus and other autoimmune diseases have uninterrupted access to their medication.”

To read more about our coronavirus coverage, check out the following blog posts:

Happy International Women’s Day! In honor of this day, I wanted to share a blog post specifically about women and autoimmune disease.

Women Suffer from Autoimmunity More than Men

According to the American Autoimmune and Related Diseases Association (AARDA) almost all autoimmune diseases are more prevalent in women than in men. For example, with the autoimmune condition systemic lupus erythmatosus (SLE), 9 out of 10 patients are women. Why is this, and what unique challenges does being a women present in the diagnosis and treatment of autoimmune disease?

Women Are More Vulnerable to Autoimmune Disease

According to a groundbreaking study from the University of Gothenberg, due to hormonal influences, women are more vulnerable to autoimmune diseases than men. The study found that the male sex hormone testosterone provides protection against autoimmune disease. Since men have ten times more testosterone than women, they have more protection from rogue immune cells than women.

The study explains that testosterone provides protection against autoimmune disease by reducing the quantity of B cells in the body. B cells are a type of lymphocyte (immune cell) that releases harmful antibodies. Testosterone provides protection against B cells by suppressing BAFF, a protein that makes B cells more viable. When testosterone is eliminated, the result is more BAFF, and thereby more surviving B cells in the spleen.

This is why testosterone is critical to the prevention of autoimmune disease, and why women are more vulnerable to autoimmunity due to having less of this hormone.

Challenges Women Face in Diagnosis and Treatment of Autoimmune Disease

Women face an uphill battle when it comes to the diagnosis and treatment of autoimmune disease. According to Penney Cowan, Chief Executive of the American Chronic Pain Association, physicians tend to dismiss women’s pain more than they do men’s. Women are often told that the pain is ‘all in their head’, or, in the case of gender-specific conditions, such as endometriosis, that the pain is just a ‘normal part’ of being a woman. Other research has found that physicians are more likely to attribute women’s pain to psychosocial causes, like stress or family issues, while attributing men’s pain to an underlying physical problem. Medical professionals also order more lab tests for male patients presenting similar symptoms as compared to female patients.

Diane Talbert, an African-American woman from Virginia, spoke to over 10 physicians for over a decade about the pain she suffers from psoriasis, an autoimmune condition of the skin, that she’s had since childhood. However, her complaints were dismissed as psychological or attributed to menopause. It wasn’t until she was in so much pain that she could no longer lift her arms above her head, that a Rheumatologist diagnosed her with Psoriatic Arthritis, a painful autoimmune disease that affects about 15% of patients with Psoriasis.

A Harvard Medical Review piece titled Women in Pain: Disparities in Experience and Treatmentfurther explored the frustrations women experience when trying to get a diagnosis and treatment. The author cites evidence that while 70% of chronic pain sufferers are women, 80% of all pain studies are conducted on male mice or men! Since women also experience different symptoms than men, such as in the case of heart attacks, physicians are also less likely to recognize the condition in women, and may prematurely discharge a woman who has just suffered a heart attack, since she’s not presenting the symptoms a man normally would.

The author also points out that because autoimmune diseases like multiple sclerosis, rheumatoid arthritis and other connective tissue conditions are chronic in nature, they’re not likely to just ‘go away’ on their own, and require active treatment to prevent further damage to one’s tissues. That’s why, if a woman doesn’t get a diagnosis due to gender bias, the consequences could be dire to her health.

Combating Gender Bias in Medical Treatment

So, what can we as women do in order to combat gender bias that medical professionals have against us? As I discuss in the blog post When Your Doctor Doesn’t Believe You, the key to ensuring you get the medical treatment you need is to stand up for yourself and be as assertive as possible. Another tip that I’ve found over the years is to bring someone else with you to your appointments that can be your advocate – someone who can attest to the fact that you’re no longer able to do the things you used to due to your medical issues. While it’s unfortunate that we as women have to rely on others to advocate for us, sometimes this is the anecdotal ‘evidence’ that a physician needs to hear in order to take our plight seriously. If your doctor still doesn’t budge, then find a new provider who will actually help you get the treatment you need and deserve.

Do you believe that you’ve experienced a medical bias when getting a diagnosis or treatment for your autoimmune condition? Please share your experience by commenting below!